Giggity, Giggity, Giggity, Let's Have an Endoscopy!

I had the pleasure of upper endoscopy December 6th at the VA hospital. It was performed without a hitch because I had a great team. During an Endoscopy, the patient is sedated, but awake and instructed to swallow a tube with a camera on the end. The gastroenterologist performing the procedure examines the tissue of the esophagus, stomach, upper intestine, and takes biopsies for further diagnoses. It’s one of my annual routine tests to monitor the progression of Scleroderma, Sarcoidosis and its complications. I don’t mind endoscopies because I never remember a thing and I wake up feeling very relaxed, but there was one time that was not the case. In 2002, because of a lousy IV placement and an overscheduled doctor at Hemet Hospital more concerned about his quota, I was conscious during my endoscopy procedure. (I had an HMO. This has NEVER happened at the VA.) If you are ever asked to do one of those awake because your doctor is a douche bag, just say no, but I digress.

Diagnostic procedures have become as routine as annual dentist visits and flu shots. My GI tract doesn’t get any special treatment. I have routine tests every year for my heart and lungs. My liver, blood platelets, white cell count and kidneys are monitored by frequent blood work, but tests for my GI tract are the most invasive. I don’t remember much about my first GI test in 1996, but it did involve a dark room and two radiologists (Giggity). While lying face down on an x-ray table, one radiologist fed me a drink, while the other operated a camera and kept telling me to hold still and swallow. The camera was an x-ray machine, the cocktail was a chalky barium drink that felt like Pop-Rocks going down my throat and the procedure was called a barium esophagram. Luckily, I only needed to take the test once. The radiologists worked hard to provoke reflux symptoms and unfortunately, they were very successful. The good news; no more chalky Pop-Rock cocktails, the bad news; it only took one of these tests to determine Scleroderma was targeting my upper digestive tract and my doctors needed more information. I had been promoted to upper endoscopy.

I don’t remember my first endoscopy. Probably because of the great drugs they gave me to forget about it. (Roofies?) Eventually, a world of ways to view my digestive tract was opened and an endoscopy was just the beginning.

In 2005, I was given a test to determine my ability to swallow called a barium swallow study. A swallow study is performed by a speech pathologist and a radiologist. I was given barium-laced banana, chocolate pudding and juice while filming the food traveling down my throat made possible by x-ray. The radiologist doing the study was surprised it took four seconds for food to travel down my esophagus. That doesn’t sound like a long time, but next time you’re eating, take a bite and swallow, then count one one-thousand, two one-thousand, etc… It’s longer than you think. Later, an endoscopy confirmed what the radiologist and speech pathologist hypothesized: My esophagus had slow motility due to scar tissue caused by reflux. In addition, I had a hiatal hernia which prevented my stomach from closing and causing stomach acid to flow into my esophagus while sleeping. I also received the diagnosis of Barrett’s Esophagus, a pre-cancerous condition where the white lining of the esophagus is replaced by red tissue. It is caused by long term repeated damage from chronic acid reflux. The pre-cancerous part of it sounds ominous, but the percentage of Barrett’s becoming cancerous is low and treatable if diagnosed the early stages.

Barrett’s Esophagus must be watched by my doctors, but maintaining my esophagus is a full time job. After the swallow study, I was given a series of exercises I practice every day in the shower and techniques to protect my airway when swallowing. I have to sleep in an elevated position. The current medication prescribed for treatment of my symptoms is Nexium- 40 mg twice a day and Ranitidine (Zantac) 300 mg twice a day. The Ranitidine was prescribed by my physician as an as-needed med. My diet (mostly) consists of foods that will not cause reflux. I start out my day with a protein shake to assist with swallowing of my meds and allow an easily digestible form of protein to jump start my day. I keep my meals small. Size really does matter and too large a meal can cause reflux. I love Mexican food and have switched my salsa from a chilie-base to a mango or fruit salsa. Ranitidine is great before meals with ingredients that can cause reflux. It’s different for everyone but for me it’s anything with garlic. For my own sanity, I have to have some of the foods I love but shouldn’t eat once in a while. Things with onions in them etc… Nothing too crazy, but when I do, I plan the meal in the middle of the day or stay up very late, take my Zantac and drink lots of water the rest of the day. Regular exercise is also helpful, but movement is always a good idea- as long as it’s not upside down on a full stomach. Stress management has helped me manage my symptoms with a great deal of success. Divorce almost cured my reflux, but because I have to share custody of my son, the Ranitidine really comes in handy along with a good sedative- but that’s a whole other entry.

Esophagus Pictures

Quagmire's Horniest Video Clips
Check these out:
Bounce to a Cure
Ironman for Scleroderma

It's A Trap!

And Now, a Tease...

Excuse my grammar, but I want to get this out there. I will have a more detailed blog in a day or so, but is you have any circualtory problems, look into this finding. I'm on my way out the door for the VA, but I just wanted to say something about the recent findings having an immediate effect on blood vessels. This is an step toward better education about the toxins around us and how it effects the smallest parts of us we take for granted. The first thing I was told back in 1992 when my fingers turned blue and tingled for what appeared to be no reason is, "Stop smoking".

18 years ago doctors knew nicotine was a vasoconstrictor. If you get a chance, do some more research about it. I will be posting a full entry about it in a day or two if you don't get to it.

Have a great Thurs. everyone!

More to read: Livestrong

Me, Myself and Viagra

Back in 1996, the results of an arteriogram had shown that the arteries of my thumb were completely closed. The only nutrition the tip of my thumb received was from retrograde blood flow from one vein. What started as a small sore on the tip of my thumb had became huge, gangrenous and black, which is how I got to have an arteriogram at age 25. At the time, there were two treatment options: digital sympathectomy or a sympathetic block. I opted for the digital sympathectomy. By the time I got to the VA Hospital four hours away, I was already in a percocet, and then morphine induced haze. The most invasive and drastic intervention appeared to be the most logical. I will never know if I made the right choice. I know it won't happen, but I still cling to some fantasy that one day I will wake up and the tip of my thumb will be back and I will have forgotten it was gone.

The biggest influence to have the procedure was a dangerous idea I would have normal hands back. It was the wish of 25 year old young woman in denial of what was really happening to her. A digital sympathectomy is a microscopic surgical procedure that removes sympathetic muscle tissue, the involuntary muscle tissue of “fight or flight” surrounding arterial walls of the hands. When the body gets cold, blood vessels and capillaries constrict to preserve the vital organs, such as the heart, lungs and digestive system. For a person without Raynaud’s, this is a gentle constriction, allowing some blood to flow. In extreme conditions without taking precautionary measure, the blood flow would eventually stop to the distal places such as fingers and toes causing frostbite and eventual tissue death. With Raynaud’s, sometimes just a slight drop in temperature can trigger this reaction to the cold as if the muscle tissue is on crack resulting in an ischemic or Raynaud’s attack. A Raynaud’s attack is the sympathetic nerves signaling muscle tissue surrounding blood vessels to over constrict where the Raynaud’s is more prevalent. It can be as obvious as fingers and toes or as stealth as the blood supply to part of the digestive tract. Fun right?

Back in 1996, Viagra was still in the very early stages of development. Fast forward to 2010, I take Viagra three times a day, plus Niphedepine once a day so I can keep blood flowing to my fingers and toes. But despite all the medication I have on board, my best defense is exercise. I still need the medication to maintain because my Raynaud’s is so bad. So why blog about it?

I feel very self-centered writing about my experiences. I want to share them and maybe they could be more interesting if I added some fiction and write in third person instead of first, but I don’t have time for all that. I want to get this information out so maybe someone who is having these symptoms can take the steps I didn’t. There are times I became so depressed and let denial rule my life and my weight dropped to 96lbs. I didn’t realize it, but I had stopped eating. I would have meals but I would only take a few bites. So, there it is. I’m self centered; I want people to learn from my mistakes. Mistakes that aren’t all mine. Mistakes my body continues to make at a cellular level that I have no control over. Blaming myself makes me feel like I have control, because once I relinquish the reigns, my ride is over. So I continue to convince myself my mistakes are not made in vain and I really do this to help others. But really, I want a cure, treatment or reversal of what is happening to me. Yes, all about me.

My Yoga Has Been Secretly Replaced With Angry Running.

Day 11 of my 120 days of yoga.


I did well the first three days. The fourth day, something happened. I was very distracted and I quit yoga in the middle of it and went to the gym. I started on the eliptical machine, but became starngely drawn to the treadmill in row in front of me. I can’t run well. My feet have contractures and the repetitive pounding can be very painful, but not that day. Maybe it was the music, but I think it’s less Rage Against The Machine on my Ipod and more rage I have cultivated inside of me thanks to my immune system acting like a meth-head on a crime spree.


I not sure what I’m angry about. My condition is stabilized, but every now and then I have transient thoughts of opportunities missed in my 30’s- but that could be more of a turning 40 thing. It could be related to my ongoing life with Scleroderma and Sarcoidosis, but that feels very ego-centric to me. Everyone has ups and downs throughout their life. Why would mine be any more difficult? Maybe it’s the silence of having a stable condition. No ER visits and fewer flare-ups have given me time to slow down, smell the flowers and notice a few of them stink.


Since that fourth day, I start with a warm up on the floor with some yoga for about 20 minutes, then on to the treadmill. I start slow, take big strides that feel like lunges to me, and then back to a comfortable pace while intermittently raising my treadmill speed two beeps at a time. After 10 minutes, something very strange happens. I get this burst. It’s not happy or sad, it just is. Like someone's targeting me with a rocket launcher from the eliptical machine behind me and suddenly fires. I explode and run like I stole something for a few minutes, then I drop my speed to fast walking and continue this walk/burst thing until my 60 minutes on the treadmill is up. When I’m finished I feel emotionally lighter. It works better than any sedatives I’ve ever taken. Somehow, this running is helping me rid myself of stinky flowers. Maybe that means someday when I stop to smell the flowers, they will make me happy instead of reminding me of what might have been.

This Time, It's Personal. I Had to Say Something.

Not Slums, Jobs. Are Yoi Listening Murrieta?

I had to say something. Some of us with ongoing chronic conditions live on fixed incomes and need Section 8 housing and also appreciate affordable housing.

When I came to Murrieta, the population was a booming 29,000. At the table next to me was a group of teenagers. They were concerned their peers were being led astray of their Christian Faith because of Harry Potter’s glamorizing of witchcraft. The group appeared to conclude Harry Potter was not good for Christianity. The one fragmented statement I remember verbatim is, “…if you are not a Christian, get out of here.”

Being new to the community, I just blew it off as a group of teenagers in a phase. My first Halloween was an eye opener. It’s a holiday to me. Not because I worship Satan, because I do not. It is the day of the dead. I know two things, we all die and certainty is a reason to celebrate. We had very few trick or treaters that night. The next day, a small group of my neighbors paid a visit to express their concern regarding my relationship with their Lord, Jesus Christ. I thought it was nice my neighbors were thoughtful enough to want to include me in their after life, seriously. More than two weeks is long time to spend with anyone, let alone eternity. I have met some very thoughtful and giving people in Murrieta of all faiths. I bring up Christianity because it appears to be the most popular and Jesus was a huge fan of the poor- at least that's what he appeared to be with all that caring for them and all.

I grew up in Orange County, before it was ever called “The O.C.” We pledged allegiance to the flag, we said “Under God” and never really thought about it, we understood the separation of church and state. There was choir in public school where we sang about P.T. Barnum and CCD on Saturday where we sang about Jesus and talked about about eating him. I don’t remember people advertising what faith they practiced. Here in Murrieta, you can’t swing a dead cat without hitting an SUV with a "Not of This World" bumper sticker. The question, “Where’s the part about a Christian country in the constitution?” has become a rhetorical one because I have yet to receive an answer. But my shock about the community I have grown to love and call my home did not come from the photographs, it came from an email.


At first, I thought it was spam. Then I realize the person who sent it was a business associate. Here is the text. I did a straight copy and paste of the email because I want you to see what I read.
“Hello

I am writing this e-mail to raise awareness about the 80-acre slum housing project to be built across the street from Antelope Hills Elementary School, in Murrieta. This project will contain somewhere between 1,400 and 2,400 low income units, including a large area of Section 8 housing. The Slum Projects will span from Antellope Hills to the Orchard Tree Shopping Center, and from Clinton-Keith Road to north of the Target Store.
Obviously, this project will affect us all personally. Antellope Hills, Shivela, Vista Murrieta and Murrieta Mesa schools will never be the same, either.

The project is scheduled for final vote on:
Wednesday, December 8, 2010, at 6 p.m. at the Murrieta City Hall.
Please plan on being there to protest the project.

Please send this e-mail to anyone you know who may be interested. Protest events are being organized before the vote. If you know someone who would like to help, please have them call…”

I decline to name the author of this email because he/she can do their own advertising. Reading this from someone I respected, shocked me into doing research. Today, the pictures shocked me into writing about it.


There are so many residents of the Inland Valley who are unemployed, on the brink of or in foreclosure while some are clearly confused about the definition of the word “slum”. The lot in the picture is Antelope Hills, north of the new Super Target shopping center on Clinton Keith near the 215. Lots of tape was used to secure these handmade signs. They were around and directly on the private property. As you can see a sign was taped over the sign explaining the usage of the property. The group against this project clearly does not wish to hide their obvious disdain for those who do not share their income bracket. They can’t even come up with something clever about the increasing number of empty homes due to foreclosure. Their strong suit appears to be four letter words like “Slum”.

Let’s clear something up right now. A slum is not built. A slum is a product of dilapidated real estate and slum lords, usually occupied by those with low incomes because that’s what they can afford. I find this display disgusting and I hope it is coming from a misguided minority of this community. Everyone has a right to their opinion, but this appears to be destructive.
Here’s what those “slums” will bring to this community- jobs. Construction jobs, remember those? You need someone to build the foundation, framers, dry wallers, electricians and plumbers. Not to mention the businesses who support those construction jobs like Dixiline, Lowe’s and Home Depot. Those workers have to eat too, right? They will need things like gas and office supplies. The finished homes will need maintenance, furniture, the occupants will need things like groceries and TV’s. Not to mention there’s a giant medical center they are building up the street and it will bring medical and support personnel who need places to live. Some will just be starting out. Some more established members of that community will help us with our empty high end real estate problem. Not to mention newly discharged Veterans, starting out after serving their country. Some will be loking for an affordable place to call home. Some will be disabled and will need to retrain for employment or recover from serious injury. That's not an easy road. I have experienced it first hand and you really need the breaks where you can get them during that transition. Are those signs in the picture what we want to welcome new members of our community who might prefer to live nearby rather than commute? If so, Murrieta may be missing a great opportunity. Stay tuned.

A Daughter's Memory of Veteran's Day

My dad and I had very little in common until I joined the military. He served as a Marine in Vietnam. I was in the Navy during Desert Storm. He was very surprised I chose to serve.

At 19, I was working as a manicurist in Davis, California. To be honest, I just wanted to get out of there. I had just broken up with my boyfriend who was as hot as Bradley Cooper, with the personality of Jack Nicholson's character in "The Shinning". Davis was a college town and I was still unsure what I wanted to do with my life, I just knew I didn't want to be in Davis. My very 1st choice was Club Med, but they never returned my calls. Then I looking into the Army and figured out I didn't like running, let alone running with an 80lb rucksack on my back. I decided on the Navy because they promised me an automatic promotion (in writing) to E-4 after 2 years upon completion of Radioman A School. I started bootcamp in July. Then Saddam invaded Kuwait and ruined what was supposed to be my Christmas in France.

My dad enlisted in the Marines. He spent time in Vietnam. My mom has told me stories about how she used to watch the war on TV. My dad didn't talk about it much. When I was a baby we lived in Chicago where my dad worked as a computer programmer in his last years in the Marines. We lived there until my dad got out, shortly after my sister was born in1974. The thing that strikes me most about being a veteran is it gave my dad and me something to talk about. I'll never forget my first Veteran's Day in 1994. I had just started college in La Crosse, Wisconsin. My dad called me and wished me a happy Veteran's Day. It felt like an unexpected right of passage. I could feel how proud he was to say that to me on the other end of the phone a thousand miles away. Over the last 16 years since I've been out of the Navy, my dad and I have forgotten birthdays and holidays, but there's always a phone call on Veteran's Day

Does My Butt Make My Butt Look Big?

So, I stepped on the scale yesterday and the digital screen must be broken or something. It said I weighed 142 lbs. That’s not bad, but for a 5’1 ½” me, it’s a bit on the chunky side.

I can’t diet. No, let me rephrase that, I won’t diet. My esophagus is so damaged and with the progression of my disease, I don’t cut anything out of my diet unless it causes me harm, such as alcohol and jalapenos. So, I’ve got to get moving. With hand and foot contractures, not to mention zero fat pads on my feet, high impact exercises such as running is out. I’d like to get back o swimming, but with the cold weather, I risk a Raynaud’s attack so I’m going to challenge myself to 120 days of yoga.

So, here I go. Would today be Day 120 or Day1? I will go with Day 120 because I like to count backwards. So, here I go. I give it 7 days. Maybe we could get a pool going?

I also added this blog to Open Salon. It has a built in audience and maybe we could raise some awarenss there. If you are already a member and would like to follow me there, just type Karen Vasquez into the search box. My first blog will be an introduction to Scleroderma and Sarcoidosis for new readers. After that, posts will be identical.

So here I go, Day 120. I'll keep you all posted. Have a great day everyone!
For more Reading"

"Exercise Can Help" By Jane Brandenstein, P.T., University of Pittsburgh Medical Center (originally published in "Scleroderma Foundation Newsline," vol. 2, no. 3, Summer/Fall 1999)

Everything Else Is Just "Spoons"

This blog is not just about me and my experiences. I want my readers find things that have helped me and form their own opinions.

I am very grateful to Christine Miserandino. She wrote "The Spoon Theory" at butyoudontlooksick.com. Check out her blog and learn about someone living with Lupus. You don't have to have Lupus to find it helpful. I have adopted her Spoon Theory to help me when things get overwhelming. The Spoon Theory has helped me understand why I need to consider my health when deciding what I can handle. I have a very hard time accepting my limitations. Turning my projects into "spoons" has helped me let go of my unrealistic guilt I give myself when I don't live up to my own expectations. I don't think of myself as sick or limited, I probably never will thanks to denial. The Spoon Theory helps me put into perspective what is really important, like taking care of myself so I can be there for my son. Everything else is just "spoons".
Thanks Christine!
Progress that brings us closer to a cure or provides better treatment for symptoms of Lupus helps everyone with a chronic disease. We are all connected. If you want to help, join me and make a donation to sponser Team Christine at the 17th Annual Walk Along for Lupus. If a donation isn't in your budget, check out her blog and learn about her experiences. Awareness and education is priceless.

For further reading...

Foundation for Sarcoidosis Research

The Scleroderma Foundation

Scleroderma Research Foundation
Lupus Alliance of America

No Big Wup, Let's Talk

Paul La Due brought to my attention an article in Huff Post "Is There a Cure for Autoimmune Diseases?", based on a young girl who eliminated gluten, dairy and sugar from her diet. I am currently doing research. I do not agree with the title of the article. A cure would mean universal elimination of a disease for all patients. The last true cure was Polio. Treatment of symptoms is not a cure but simply that, treatment. I do however see how a change so dramatic as eliminating sugar, gluten and dairy could really benefit a person with an autoimmune disease. My question is, has everyone who has eliminated these things experienced relief?

I have started a disussion on Face Book. If you have done something like this and would like to share, go to my FB Page and join the discussion.

Please note, all soliciations will be deleted and solicitors will be blocked from my FB page and be flagged.

Thanks Mike Myers for the Title

"Lay off me, I'm Starving!"

"Is There a Cure for Autoimmune Diseases?"

Scleroderma, Sarcoidosis and Box Wine on Face Book

And just to make you smile and remember Phil Hartman and Chris Farley

My Dreams Make Me Tired

And according to Regis and Kelly, my bra doesn't fit me either, but I digress.

I woke up this morning exhausted. I was asleep by 9:30 and when I woke up at 7 this morning, my whole body was tired. I wish I could remember what I did last night in my dreams because I know I accomplished something.

I could feel the lymph nodes in my chest because I could not breathe as deeply as my norm and the more I think about my day of packing and calling utility companies to set up services, the shallower my breath gets. It’s time for some serious stress relief. First, I am going to set up my utilities. Then I am going to the Y to do some exercises in the pool. There is something so relaxing about it. Hopefully that will help me reboot and get me packing. I'll keep you posted.

I have to admit I feel very egocentric going on about how I'm dealing with stress and keeping people posted. But I also fell like if I don't share, maybe there's someone out there who woke up feeling exhausted and maybe taking the time to share my experience can give them some ideas to help them get through their tough day. I have had so many days that started out like this and resulted in leaving me curled up in a ball under my covers. Just finding a healthy way to deal with what the universe throws at me is an accomplishment in and of itself and it makes me feel as if I am kicking my depression in it's teeth. Or I have an over active case of undiagnosed narcissism. Either way, sharing makes me feel like time curled up in a ball was not spent in vain.

Foundation for Sarcoidosis Research
Scleroderma Foundation
Scleroderma Research Foundation
Interstitial Lung Disease
Depression with Chronic Illness
The Stress of Moving


http://www.thenakedscientists.com/HTML/content/latest-questions/question/2032/

A Word About Sarcoidosis

I'm moving this weekend and doing the prep that comes with it. I haven't had much time to write, but I did find a blog with some helpful entries and links to other blogs. These nasty diseases are different for everyone and I encourage readers to visit other blogs to get as much info as possible. Check out The Sarcoidosis Experience, if you get the chance. I am also happy to post for the first time, a link to a Sarcoidosis fundraiser. I found it at The Sarcoidosis Experience blog and there is also a link at the Bernie Mac Foundation website. If you can't donate, please take the opportunity to learn more about Sarcoidosis.


Scleroderma Foundation
Scleroderma Research Foundation
American Lung Association California

Now What?

Well, I'm not in remission or cured. I just feel better. Sure I have ongoing health issues, but that part of my life. I will still have the PFT's, Echo Cardiograms, Thoracic CT's, upper endoscopies, infusions and blood work. That list I just mentioned- I'm terrible at making those appointments. I dread them all. (Except the endoscopies because I never remember them and I always feel very relaxed and happy afterward.)

My problem isn't the tests. My problem is I need to stop making such a big deal out of it. It's important, but every day people make changes because of their health. For example, a person gets a high cholesterol score and works really hard to make everyday lifestyle changes just to prevent something from getting worse. They cut things out of their diet cold turkey, take the extra time to prepare fresh vegetables and learn to love them and make time to exercise. It doesn't happen for them overnight, but they do it. I have a lot to learn from them.

I take the easy way and the easy way is not always the best way. I feel like it's making me lazy. I avoid preparing food for myself. I'll opt for a protein shake and maybe some toast instead of taking time out to prepare fresh food. Sure that's okay sometimes, but I am doing it all the time. The result of this is I forget to shop for food. When I do feel like eating I end up eating fast food. After reading the last two statements, I don't just feel like it's making me lazy- it is making me lazy. Maybe it is time to be hard on myself.

Infusion Fun

I was the lucky recipient of a Remicade infusion I get every 8 weeks. I planned on doing a ton of writing, but instead opted for the nap. I rocked out to Snatam Kaur while I feel asleep. Something about the chanting of a mantra with some smooth sounds from a sitar, really clears my brain. I'm no chanting aficionado. I heard this CD at Kundalini Yoga class I took three years ago; I attended regularly and bought a DVD. At the end of the workout, there was meditation with Snatam Kaur’s music, very mind clearing.

I learned something today. It tool 3 sticks to get my IV started. More is not the norm. I think it was the Jack in The Box I ate before my appointment. So I'll just add that to my list of things not to do before my infusion. I have no scientific data to back this up. I am basing my theory of how I can control things on my personal experience. For example, if I don't drink enough water before an IV stick, that usually results in a second, third or 4th IV stick. I came to that conclusion when I was in the hospital on the cardiac floor of UCLA with a MRSA (that's a whole other blog entry). My IV had to be moved and there was consideration of a PIC line. Determined not to add another complication to my hospital stay, I tried to think if there was something I could do to make my veins behave. I thought about my routine in the hospital, and while in my morphine/hydrocodone haze, realized I wasn't getting enough water. So, I finished what was in my lovely pitcher I could take as a parting gift. I was on a lot of morphine and hydrocodone and it's easy to get dehydrated. An hour later, another attempt was made to move my IV before calling the PIC line Nurse, and it was started with ease.

As I stated earlier, this is just my personal experience. The results of my drinking water could have been psychosomatic, but who cares? I really don't care how something works, just so long as it does. Besides, what better ways to relax a control freak than letting her think she can control a situation most likely out of her control. Denial ain't just a river in Egypt (Mark Twain); it's a fabulous coping skill.

Thanks for reading:-)


Best Description of Sarcodosis I have read yet
Foundation for Sarcoidosis Reasearch
Scleroderma Foundation
Scleroderma Research Foundation
Remicade
Spirit Voyage
Snatam Kaur
Livestrong.com
Books I have read and found helpful:
Strength in the storm: Creating Calm in Difficult Times
The Places That Scare You: A guide to Fearlessness in Difficult Times
(Just for fun)
My Horizontal Life: A Collection of One Night Stands

Well Said.

Check out this blog, In Sickness and in Health. She also has Scleroderma and is a potential candidate for a lung transplant. This disease affects each person differently and when I find a blog I like I want to tell my readers about it.

The hardest part about having Scleroderma, Sarcoidosis and any chronic disease is sometimes the cure is worse than the disease. It's frustrating. My opinion is; don't I want these treatments while I am feeling strong and healthy? The answer is no. Six years ago, my rheumatologist at the VA and I both agreed I may be a candidate for a stem cell transplant. He no longer had any idea what to do with me and recommended me to a great doctor at UCLA. My doc at UCLA told me I was too healthy for such a dangerous treatment. The risks outweighed the benefits. At the time, I was upset but it was a very smart move.

As long I can remember, I have had difficulty breathing. I was finally diagnosed with Sarcoidosis in 2007. All of my symptoms had not yet manifested and I am sure there’s more to come. It almost feels like Christmas, but it’s more like riding a rollercoaster blindfolded. So, I'll continue to ride this thing until I am sick enough. The longer I wait, the safer the treatment may be or maybe they'll come up with something entirely different. Patience. And I want it now damnit!

Scleroderma Research Foundation
Scleroderma Foundation
Foundation for Sarcoidosis Research

Cure vs Treatment. Question and comments.
Revisiting the relationship between baseline risk and risk under treatment. 2009 (Wang, Boisell and Nony.)

Boobies, They Make Everyone Smile

I can only speak for myself, but having two chronic illnesses often distracts me from paying attention to regular maintenance. Karen Gottesman calls it "Common Sense things". It's easy to get overwhelmed with doctor's appointments, diagnostic tests, blood work, infusion appointments, OT and on and on. I forget about things like seeing my dentist, getting my lady parts checked or waiting until I loose my last disposable contact lens before visiting my eye doctor.

Bringing attention to other diseases is just as important as raising awareness for Scleroderma and Sarcoidosis. I don't wear cause bracelets because my wrists are too small. If I could, I'd wear the, “I love boobies”, bracelet because it's the funniest and a great conversation starter. Every disease deserves to be eradicated. They all suck.

Today I'd like to bring breast cancer into the spotlight. Yes, they get all kinds of press and coverage. That doesn't mean we should ignore it. It just means it’s that much closer to being eradicated. People with Scleroderma and Sarcoidosis get Breast Cancer. In fact, I'm willing to bet some symptoms of breast cancer are often mistaken for symptoms of the already diagnosed chronic disease before Breast Cancer is detected. Anyone have this problem? Please comment.

What brought my attention to Breast Cancer was hearing about two of my friends- mother and daughter, getting diagnosed in the same year. This is not the first time Breast Cancer has affected someone I care about. In fact, it killed someone I love very much.

Olga and her husband Roy grew up with my grandparents in Brooklyn and moved to California with them. I did not find out about Olga’s Breast cancer until the last few days of her life. I did not realize how far along the disease had progressed in her and before I could make time to go see her, she passed away.

I come from a very large extended family. Olga was not related by blood, but she and her family were and still are, our family. She was the life of every party. I miss her laugh that you could hear two houses away. No matter what mood I was in, she always made me smile and made me feel very loved. My cousins and I always thought Olga would be the one making us laugh at everyone else's funerals, but she was the very first of that generation to go. I could write a book on my experiences with Olga and this entry is small in comparison to her impact on my life. 11 years later I still miss her at every family gathering. I am very sad my son will only get to know her from pictures and stories, but he will know of her.

In memory of Olga, in honor of Roberta, Luanne, all those going through treatment and surviving Breast Cancer and in memory of those who lost their battle; take some time to do a self breast exam (guys too- yes, men do get it). If you can, visit Roberta's pledge page and help her exceed her goal of $300.00 for Team Krause/Smith for the Steppin’ Out in Pink Walk on September 11, 2010.

Thanks for taking the time to allow me to share with you something close to my heart.

Keep A Breast.org
The American Cancer Society
Breast Cancer In Men
Scleroderma Foundation
Scleroderma Research Foundation
Foundation for Sarcoidosis Research

Support Steppin' Out in Pink

In 1994, I moved to La Crosse, Wisconsin from Southern California. Being a California native, let's just say I'm lucky I didn't die of hypothermia. I survived Wisconsin and fell in love with it thanks to the Krause Family. Roger and Luanne, their children Christie, Leora, Roberta and Carl. I met Carl while I was in the Navy and I moved to Wisconsin with him so we could both attend nursing school at Viterbo College (now University). The Krause Family of West Salem made me feel welcome, even at my bitchiest. I was no picnic to live with. We started out at Roger and Luanne’s and eventually, Roberta, who lived alone at the time, was nice enough to let me be her roommate. Again, I was no picnic. I was newly diagnosed with Scleroderma, in a lot of pain and very hard to live with, yet Roberta still made me feel welcome. We folded laundry on her couch and she taught me how to make a great seafood Alfredo my son absolutely loves. The Krause Family continued to invite me over to holidays and make me feel welcome, even after Carl and I broke up. They made me feel like I had a family 2000 miles from home. (On a side note, Carl’s a great guy, but when you have two Scorpios together, it's the equivalent combining gasoline and a blowtorch- that and I was such a bitch!) I'm very grateful to all of them. They showed me just how great Wisconsin is. They taught me golf, football, introduced me lutefisk, how yummy hotdish is and about how important it is to wave to my neighbors. I will never forget their hospitality and I'm very grateful for getting the opportunity to know them. I'm very grateful to their son, Carl for telling me about La Crosse and sharing his family with me.

I haven't seen the Krause Family since 1999 after I moved back to California. I recently found Leora and Roberta on Facebook and have kept in touch with them through wall postings and picture sharing. They have also been very generous contributors to the Scleroderma Foundation and have sponsored me and my son on our walks since we have regained contact.

In 2008, Roberta and her mom Luanne were both diagnosed with breast cancer. Luanne is done with her treatment and doing well. Roberta has not been so lucky. The cancer has metastasized and moved into her bones, called Metastatic Breast Cancer. This is often not diagnosed until stage IV. Metastatic cancer is often considered incurable, but there are many survivors.

Roberta has the support of her family and friends but she is in the fight of her life. This blog isn't just about Scleroderma and Sarcoidosis, it's about being human. All diseases are bad. If one disease comes closer to a cure or treatment, the research and information has a ripple effect that will help the research of others. No matter how small, progress is progress.

Everyone knows someone who has been touched by cancer. Help Roberta and her team exceed their goal of $300.00. Sponsor Roberta for the Steppin' Out in Pink Walk, Saturday, September 11. Pitch in what you can. Every donation makes a difference. If 20 people donate $5.00 each, that’s $100.00. Every dollar counts.


Thank you for taking the time to read about a family who really made a difference in my life. Thank you in advance for making a generous donation to fund research, patient support, effective treatment and one day a cure for one more horrible disease.

Roberta's Page
More about Metastatic Breast Cancer
A Survivor's Story
METS Matters Blog
Gunderson Lutheran Medical Foundation
Join Steppin Out In Pink on Face Book
Speak to a Survivor: 1-866-891-2392

Does This Stick Make My Butt Look Big?

Do you ever have one of those days where nothing is funny? Everything feels inappropriate? And you just want your own ideas to work and any criticism of them is an attack on your reason for existance? Today is one of those days for me. So, I'm working hard to pull out that stick I have up my butt today. I'll be doing some yoga later. I don't have a specific story- or at least one I want to share on the internet. Maybe this is attention seeking behavior? I'm only posting my thoughts on the internet. Doesn't everyone want to know my thoughts and opinions? Seriously what is up with my blogging? Why is it I want to convey to the world that I too wish to know how to say "soup of the day in Latin"? Maybe I'm just jealous Stephen Colbert could come up with a joke using Latin or King Tut's Penis and I can't think of anything funny about a goofy GI system. Seriously- that should write itself. All this and I completely forgot about the complementary medicine teleseminar put on by the Scleroderma Foundation. I'm really slacking here. So I'm off to remove this stick and somehow grow my sense of humor back with some yoga- or Ben and Jerry's. OMG have you tried Americone Dream? I can't get enough of that waffle cone goodness. Oh man it's Stephen Colbert's flavor. I am vexed- COLBERT!!!

Taste the Truthiness
Could it save your life?
Still can't get enough? It's on FaceBook for Ra's Sake!

Normal Mom

Happy Friday Everyone:-)

First, I want to apologize to those with Sarcoidosis for not mentioning I have it in the following story about my son. Scleroderma is more noticable in me and this is the true story. I'm not sure if mentioning one disease to my son at a time is the right idea, but 2 seems a lot for a 6 year old to handle. I haven't quite figured out how to tell him that part of it. I will keep you posted. Really, I think Scleroderma would be interchangable with any disease in my story. One disease isn't worse than the other. They ALL suck.

I posted a picture on Face Book of myself holding my son. The reason- I always felt self conscious when holding him the way I had to because of the condition of my fingers. I’m still self conscious, but I’ve come to a place where it no longer bothers me. The self consciousness is more like- stare if you want, I’m busy.

Before I had my son, I had stopped touching other people except for handshakes. I’m completely the opposite about handshakes. I love sticking my hand out just to watch someone’s reaction. Cheap entertainment for me, but I digress. My interest in touching stopped sometime in the 90’s. I’m not sure when, but one day I just stopped touching people. I shake hands when I meet people, but anything close or intimate- not so much. Simple things like putting a hand on the shoulder of a friend when she was crying or upset felt useless or fake to me. I was much better with hugs.

I didn’t really notice my aversion to touching others until the first time I held my son. I picked him up so awkwardly, I was afraid I was going to drop him. I touched him, and my heart broke when I realized I could touch him with my knuckles, not my fingertips. There are ways I could touch him with my fingertips, but to pick him up or hold him, I had to use my knuckles. I never missed touching anything until then. I became worried I wouldn't be able to do the things a normal mom could do. I became depressed about it and didn't even realize my behavior had changed. I was told constantly by friends, family, my son's pediatrician, and my shrink how good a job I was doing at being a mom but I just wouldn't buy it.

Now that my son is 6, I look back and here's what I do know and I want every mom to know, disabled or not. There is no such thing as a normal mom. I thought my son was adapting to my disabilities, but the truth is he didn't have to adapt to anything because I'm the only mom he knows. There was so much I put into my head about what I couldn't do, I forgot that there was so much I could do, especially in public. I made myself feel like a freak show and would miss out on simple activities so I wouldn’t draw attention to myself.

Kids don't judge. My son never thought anything was wrong with me. I allowed my mind to make a bigger deal out of things than they were. Every parent has something different about them. It could be hard to spot or in plain sight, but there's always something. Sure, disabled parents have personal obstacles and for most, those obstacles were there before they were parents. And really, parents who aren’t disabled have their obstacles too- so right there, the playing field becomes level. Disabled or not- parenting is challenging, frustrating, painful, smelly and will scare you right out of your shoes(Wow, I really had to work to clean up that last one. Thank you, Dr. Seuss.) Wanda Sykes used to talk about what parents told her about having kids, "yeah... but there worth it." She had no children at the time and called it a conspiracy by parents to recruit more parents. She was right. I think if all parents knew exactly how tough it was to be a parent, the human race would've been extinct a long time ago.


Now, I'd be making a huge omission if I did not mention my son noticed my hands were different at a very young age. I think it was before he could talk. He would take one of my hands and try to straighten them. Sometimes he would catch me off guard and it would hurt like hell. I would gently loosen his grip and tell him, "Mommy's hands don't work that way." His curiosity was satisfied with such a simple answer he would move on to something else. As he got older, he started asking questions. The answers started out simply "That's just the way Mommy's hands are" then became, "Mommy has Scleroderma.", followed by a simple explaination. Once he had that 75 cent word in his vocabulary, the questions became more complex, but at weird times. It was actually kind of funny watching him wrap his head around it. This was a typical conversation,

"I need to sit on the couch, this floor is not very comfortable."

He'd ask, "Mommy, is it because you have Scleroderma?"

"No Honey, it's because the floor is cold and hard."

About Scleroderma, I kept my answers simple and honest. I did not want to worry or lie to him, but simple worked well and still works today. That short attention span kids have really comes in handy sometimes.

When he was 5, I laid it all out for him. I sat him down and explained Scleroderma the best that I could and made sure he knew I was going to be okay, no matter what. It took him a while to process it, but I think he understood then and understands it now as best as any 6 year old can.

Short story long, I posted the picture because a person with finger contractures holding their kid with no make up on (Warning) is rarely seen. So there you go. Check it out. Parenting

Thanks for reading.
For more reading:
Parenting and Disability: Disabled Parents' Experiences of Raising Children
(I haven't read this yet, I just found it on Amazon. If anyone has read it, leave a comment about it. Thanks)
Foundation for Sarcoid Research
Scleroderma Foundation
Scleroderma Research Foundation

A Hole and Border Patrol

I would like to send a big shout out to the Border Patrol Officers who helped me last night. It was 10:30pm and I thought I had at least 20 more miles left in my gas tank, but I was very wrong. Luckily, my car died right in front of a Border Patrol Check Point. The Officers hooked me up with some fuel to get me the next 5 miles to the nearest gas station. They were helpful, friendly and while waiting I had front row seats as they pulled one tweaker over after another during a surprise checkpoint stop. Drug addiction is a horrible disease, but you have to find the humor in the silly way some adults will try to fool someone sober into thinking they are not high.
Thanks Officers for the help- and the show!!

One of the reasons I routinely play chicken with my gas tank is because I need assistance pumping gas into my car. It gets messy and I can’t open my gas cap with my contractured fingers. I don't know if its pride or stupidity, but I hate going to gas stations and asking for help. I would pay for full serve, but to get that I would have to go to Wisconsin or Beverly Hills (seriously). I have regular stations I go to locally where I know people and they are always happy to help, but at night attendants are usually alone and I hate asking even more. I know it's no excuse for doing something as stupid as playing chicken with my gas tank, but I wanted to explain.

And now, a gross story about my elbow, enjoy...
So, yesterday while sitting at a stoplight in my car. I bumped my elbow on my arm rest right on a dried out sore. I took a look at it in my rear view mirror and saw a hole in place of the sore. Sounds gross right? Well, there was no blood or fluid of any kind. just a perfectly round hole. It looked like someone took a one sided hole punch to my elbow. There was live healthy skin in the depression and healthy tissue around the circumference of my sore. It doesn't even hurt. So, I'm just going to keep an eye on it and keep it clean. It sounds crazy to me but I just had to tell someone. I hope you weren’t eating when you read this.

Common Treatment for pressure sores
Picture of Digital Ulcer
More about Digital Ulcers
Wound Care (Do not click on the pictures they are a bit gross, but the article is good)
ALWAYS consult your physician about the care and treatment of your own digital ulcers. These articles and links are provided as information only.

Big Changes for my Little Guy

I guess he's not so little anymore. He starts 1st grade tomorrow. I rearranged his room. We went to the store last night and I gave him a budget to buy toys. He picked them out, we brought them home and he got to open one. The rest he will get to play with AFTER he goes through his toys and picks out what he does not play with anymore. The, "I'll buy you new toys" thing no longer works. My little ADHD guy needs to see the toys as a reminder when he looses interest in cleaning- which is about every 20 minutes. When he gives up, he goes to the kitchen table, asks me if he can open them,I remind him to get back on task and he does. We'll see how long this technique works.

A Few Changes

The School year starts for my son this week and every year at this time is a new beginning for me as well. When I was a kid, I never understood why the year ended in January, not the last weekend in summer. Here I am again, all grown up looking forward to a new year in August.

I'm not the one starting a new school year, but I still wanted to start something new. The obvious change is the design template of my blog. I'm not talented enough to design my own, so I picked this template. It seemed light. Then I removed my G ads. I left out the whole word because I don't want to get kicked off blog spot. I took off the ads because I was starting to worry I might see the, "Cure Scleroderma by eating a jar of mayonaise." ad. The only thing I will continue to plug are things I find helpful or interesting, like a book from Amazon, etc...

So, that's what I have so far. Some nice superficial changes. There's always room for growth and change. I'm not sure where to start, I'm staring from the outside and working my way in. If I get too nuts someone may have to remind me that my underwear goes on inside the pants. Then I know I've run out of ideas and should probably be reminded to get a meds check.

Stuff that caught my eye today...
Genuine Imitations By Phil Taylor
Tips on where I can get fiber from Stephen Colbert

Just One Study

My emotional rant yesterday did leave out a few things. First of all, any OT or health practitioner worth his/her salt will question any study. The study I sighted was important, but important to me. It showed something I was sure of was effective. How valid a study is, is the replication of that study. Many things touted as facts in our culture begin with statements like, "Studies show...", or "Some say...", or "They say...". I say, "What Studies?" "Who are They?" and "How do Some know?".

I have sent the study to my OT. I may need to find more studies about massage and it's effects on scar tissue- and that's okay. Anytime something is called into questions that I tout as fact, I hadv better make a case for it by doing my homework.

I'll blog about my progress next week. Right now, I've got some outdoors to get to.

Have a great weekend everyone!
Karen

Not Angry but Annoyed.

I was all set up for my OT to begin today and 40 minutes before my appointment my OT called to cancel. Her reason; she was unfamiliar with the study, she sounded a little iritated that my doctor had found "some study" and she was unsure the treatment was appropriate.

If there is a gold star for patience, I would've got mine during that phone call. I told her I was the one who found the study, not my doctor. I asked her for her email and I'm bringing in a hardcopy.

It's very hard not to take this sort of thing personally, but I don't. She's a great OT, but unfamiliar with Scleroderma. It's a very familiar wit most caregivers throughout my battle with Scleroderma. I'm trying to keep it in the VA because that's where I get my healthcare and funds are very tight. It's hard to find any practitioner within 120 miles who has worked with Scleroderma. My choice, get her the right info to get this going. I could try to take it to a different VA, but I do dread the thoght of the next service connected veteran to walk into that department with Scleroderma and being denied treatment. I also have to take into consideration two other factors.
1. She's at the VA and she has a ginormous case load with 2 wars going on- this is not her fault.
2. She always appeared apprehensive to touch my hands because of their scarred condition. This is her issue, but it's an ignorance issue. Ignorance can be treated with knowledge.

I have to scram. I have an another appointment in an hour so please forgive my typos and spelling errors. I just wanted to get this out before anyone else has this problem.

We can let ignorance trump hope.
Happy Friday everyone!

Breast Feeding

Why would I even care about Gisele Bundchen's opinion about breast feeding? Well, I have a horror story of my own about being bullied into spending hours with my "A" cups hooked up to an unmerciful motorized breast pump days after the 8 week premature birth of my son. And, there's also a possibility the blog will pop up in some search engine with the Gisele mention.

First, if you can breast feed, do it. I would have if I could. I support public breast feeding. The reality, not everyone can do it. In 2004, my son was born at 32 weeks. I had HELLP Syndrome and my organs were failing. The only cure was to end my pregnancy. So, my doctors delivered my son by C-section.

I never had that whole filling with breast milk that usually happens to pregnant women. In fact, my bra size only went up because of my increased circumference.

Long story short, a few days after delivering my son, a breast feeding nurse came in to counsel me. I guess she didn't read my chart because she tried to scare me by telling me, "Your child will be protected from getting certain autoimmune diseases if you breast feed." Being a breast fed child myself, the only thing stopping me from taking my IV stand and beating her with it were witnesses. My ex husband also threw in, "Honey, you're a mom now and your son has to come first. You have to try." or something like that. I was in the middle of a morphine induced haze while being given medication to get my blood pressure down from 200/99. (hence the term ex)

Once released from the hospital, I spent way too much time with the breast pump and after days of tears and stress with less than an ounce of breast milk to show for it, I stuck with the formula the NICU had been feeding my son. The stigma of not breast feeding your baby is beyond annoying. The time and stress I put upon myself could've been better spent with my son in the NICU.

My son is now a healthy six year old about to start first grade. Not having breast milk has not impeded his development. He is short because he was 8 weeks premature and I am very lucky he's as healthy as he is for as early as he arrived.

Thanks Gisele for the remark. You may have helped spread awareness for Scleroderma and Sarcoidosis by helping with my search engine placement.

Some reading if you like
HELLP Syndrome
Preeclampsia Foundation
March of Dimes
Mary Birch Hospital for Women and Newborns

Spreading Awareness.

I would like to thank all my readers and everyone who "liked" my page on FB. It's a great way to spread awareness. One person who helped raise some awareness was Paul LaDue. He has created a Face Book page to get Stephanie Miller to replace Larry King when he steps down. I think it's a great idea. Check it out... The Stephanie Miller Show with her Mookes have entertained and informed me during many hours of driving to doctor's appointments and tests. I drive 46 miles one way to my medical team at the VA Hospital and 120 miles one way to my specialists in LA.
It would be wrong not to mention the infamous Mrs. Taylor, who keeps Stephanie in printer ink and has shown tremendous restraint by not throwing Steph down a flight of stairs especially in her "infirmed" state.

I also noticed Paul is supporting a movement to draft Jon Stewart to moderate the 2012 presidential debate. I have been watching Stewart since he started at Comedy Central and I have seen him ask questions I wish a real journalist would ask of those he's interviewed. And he's a fake journalist! I have to agree with Paul on this one as well. Maybe Steph should be added to the list of potential moderators?

For those of you upset about my mentioning some liberal shows, thanks for hanging in there. My dad is a Republican/ Tea Partier. I love him to pieces and we have some great conversations. If you need something else to get your mind off your frustraion with my liberalness, here is is... boobies. Boobies, they make everyone smile, don't they? My next entry is about boobies. If you found that offensive, well I've run out of things to clear your mind and I'll just thank you for hanging in there and continuing to read. Scleroderma and Sarcoidosis have no opinion.

My upcoming topic is about breastfeeding while having an autoimmune disease. A certain super model seems to think it should be mandatory to breast feed a child. But what happens when you can't?

Doing Homework Restores Some Hope

In 1996, I lost part of my thumb because it had become gangrenous from severe Raynaud's. I had a non healing sore for months and unfortunately, it was too late before I found an orthopedic surgeon who diagnosed it and expedited the treatment through the VA in Madison Wisconsin. A surgery called a digital sympathectomy was performed on my right hand. An incision was made across the lifeline of my hand. Microscopically, the sympathetic nerve tissue surrounding the arteries in my hand was removed. Immediately, blood flow was restored to my thumb. What was left of my thumb quickly regenerated over the next few weeks while in a cast. (A sympathectomy does not produce permanent results. The muscle tissue grows back.)

Once the cast was removed, I was introduced to Occupational Therapy. I was only 2 years into my diagnosis and so much was going on, I had no idea there was a specialty in the recovery of my hands. Before the worst happened, I had only been given a leaflet on hand stretches to prevent contractures, but that was it. It turned out my OT was one of my biggest allies in keeping my hands moving for almost 3 years.
She used paraffin, connective tissue massage, passive range of motion and something called joint mobes. I forgot what it is short for but basically the OT stabilizes the finger on both sides of the joint and moves it back and forth (It's not that simple and don't let anyone try this on you who is NOT an Occupational Therapist. I have had chiropractors attempt this after I moved to California. Do not let them unless they are a licensed Occupational Therapist as well.)

Long story short, after moving to California, and thanks to some cuts in the VA after 2001, my new OT determined the treatment done by my OT authorized by the VA in Wisconsin would no longer be authorized by the VA due to cuts in funding. I was told by my new OT in CA that the VA could not justify ongoing treatment. About 2 years later, despite splinting and exercising, my fingers contracted severely and continue to be 8 years later. (pictures posted on Face Book)
Back to my homework... Yesterday, I had an appointment with Physical Rehab Medicine at the VA to specifically address the study I referenced in my July 16th blog from Current Opinion in Rheumatology: Musculoskeletal Rehabilitation in the Person with Scleroderma. I got to my appointment and realized I did not have the study with me, so I referred the doctor to my blog where she printed a copy of the study and presented it to the attending physician. After a 10 minute wait that seemed like forever, the doctor came back in and set me up with OT for 9 weeks twice a week for connective tissue massage, joint mobes and paraffin for my hands. I will just quote the study, “except for splints, these studies show improvement in joint motion, hand function and cardiopulmonary endurance (Poole, 2010).”

The doctor congratulated me for doing my homework to get what I needed. She had a very positive outlook about it. One of the best parts is, the OT that told me those treatments would not work, was going to be the one administering the ordered treatment. I really liked her personally, but I do like it when I am proven right. (I’ll try not to gloat!)

Now, because things went my way, this does not mean I expect to have full use of my hands in 9 weeks. That’s just unrealistic. Worst case is the treatment stops in 9 weeks, and then I become eligible again for another round the following year. 9 weeks twice a week is quite a commitment, and with some progress will make my home program more effective.

My treatment starts August 6th. Needless to say I am very excited and I will keep everyone posted on my progress.
And new, some unsolicited advice:

I have been told so many things over the years. A long time ago, someone gave me Echinacea. They thought they were being helpful because it would help my immune system. It helped it alright; it helped it cause a flare up because I have an autoimmune disease. I take medication to suppress my immune system. I didn’t realize boosting my immune system could cause a flare up. Don’t be afraid to bring in studies for your doctor or medical team when their treatment ideas do not meet with yours. Keep in mind this information cannot just come from anyone. Now, you can’t just bring in any study or opinion. You need to be sure the studies or clinical trials have been conducted ethically and that they meet criteria for reputable research. I have posted links below explaining criteria for a reputable study. By all means find other links, but be weary of links related to selling what is used in the study. That’s a HUGE conflict of interest. Do not let a practitioner, blogger, friend, or anyone try anything on you that you feel uncomfortable with or sounds too good to be true. My favorites are friends and family who tell you something "They" say will help you. My favorite question is, "Who are THEY? and can THEY provide any proof." I make fun of it, but loved ones mean well and only want to help. You don't have to be mean about it. I usually thank people and do my own research. If you find a study that shows results you are looking for, make sure it meets protocol and criteria. There are no miracle cures. DO YOUR HOMEWORK.


http://www.medscape.com/viewarticle/717087_7
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=402
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1089058/
http://clinicalstudies.info.nih.gov/what_is_study.html

Online Support Groups

Good Friday morning everyone!
I had my Remicade infusion yesterday and I feel great today. I met an amazing person yesterday who really inspired me. She's a breast cancer survior and a nursing student. She looks great! She told me about some things that have helped her. One of them was alkalized water and how making your body less acidic and balanced prevents cancer. Her health and energy level offered some valid proof to me. Of course, I will be researching this and posting links to studies in a later post. I just wanted to mention my experience with her because she really inspired me.

I know firsthand having a chronic degenerative disease can lull one into thinking it's a get out of jail free card for anything else- it's not. It's still important to keep up on all the other things that come naturally with age. It's difficult for me to schedule those boring routine appointments between the echos, PFT's, Upper Endoscopies, swallow studies, blood tests, visits to 3 doctors every four months and of course those infections in between. I dread squeezing in those appointments, but I push myself to do it the older I get.

A few years ago during my annual exam, my NP found a lump. It turned out to be nothing, but now I get to have a mamogram every year. I'm not happy about that test, no one is. As for the colonoscopy, they have 10 more years to perfect that capsule with a camera one can swallow. I hope to luck out on that one.

Before I go I want to tell you about an online community I found. I am no good with support groups. I really like this online community. I logged on and read some great stories from people with Scleroderma and Sarcoidosis. (not at the same time- hey, not everyone can be as cool as me:-) The online community is called Inspire. Check it out.
Inspire for Scleroderma
Inspire for Sarcoidosis

Infusion Fun

Time for my eight week infusion of Remicade. Going to bed early today and looking forward to spending 3 hours hooked up to an IV for 3 hours tomorrow. I'm currently reading "Alice in Wonderland" and will be bringing it. I have never read the novel and I'm really into it right now. Since seeing the new movie, I am really enjoying the story. Next on my list, the second half of my book, "Through the Looking Glass" Loving the Lewis Carroll right now.

Everyone have a great Thursday!

National Patient Education Conference

Wish I could go this year. I had the privledge of attending in 2008. It was so helpful. I made some great friends and learned so much. I also realized I knew more than I thought I did. I left the conference feeling motivated and re-energized. Hopefully they will announce a west coast location for next year. Check out what I will be missing July 30.
2010 National Conference

If you can, go. Get information from doctors and clinicians who work research and see Scleroderma patients. To find a support group or chapter in your area, go to www.scleroderma.org.

Can I Do This?

That's the question I asked myself Wednesday morning after waking up tired. Before I woke up, I was dreaming I was getting ready to go to sleep after a long night helping my best friend from high school rescue her child from a werewolf kidnapper. It turns out he only wanted to celebrate Christmas with us. I don’t really care what that dream means. I just wish I would remember those insightful dreams that leave me with thought provoking solutions that I usually forget 30 seconds after I’m awake. I know I'm supposed to write these down, but that would be WORK.

Speaking of work... (Call me Queen Segue) I started a part time job doing bookkeeping services for a local business. I haven't worked steadily for 2 years. I had grown accustomed to showering late mornings after my coffee and work out. Since July 1st, It's get up, shower, get dressed, have breakfast and get to work. I am enjoying my new job. The people are great and I am learning so much related to bookkeeping.

On the surface, it's great, but I have a concern lurking in my mind regarding my commitment to my new responsibility. It is only part time. My employer is very willing to be flexible with my schedule regarding doctor's appointments. He must be very willing to work with me because on my 3rd day I had to call in sick. Two years ago, I practically worked myself to death, but I did own my own business and have a failing marriage. Now I'm working part time for someone else and have a very happy and fulfilling personal life. My goal is to find balance. Changing my thinking of finding balance instead of just, "Can I do this?" reminded me quitting is not the answer. If I don't try, I've already failed. So I'm giving it a go.

So far, I have been pretty tired. Fatigue has been hitting me hard. I don't want to give up yet because it is still early and maybe my body needs to adjust. I will be working 4 days. I am thinking of changing my day off to Thursday, so I can take it easy and finish off the week with enough energy to enjoy my weekend. Plus, with the extra income I will be able to afford regular massages and pedicures. Massages and pedicures may sound a bit indulgent, but I have found a great deal of pain relief with regular visits to my massage therapist. A pedicure once a month helps my circulation and the massage also helps with foot pain. The more I think about it, the more I feel I’m making the right decision. Again, it is early and I need to give myself time to balance between my health and work. I know balance is possible and necessary to succeed; I just need to find it.

Recommended reading:

Pedicure Safety
Inner Peace for Busy People
Foundation for Sarcoidosis Research
Scleroderma Foundation

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

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.

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