Wednesday, December 1, 2010

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.

Tuesday, November 16, 2010

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.

Sunday, November 14, 2010

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.

Thursday, November 11, 2010

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

Friday, November 5, 2010

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)

Sunday, October 17, 2010

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

Monday, October 11, 2010

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

Blazing Flare-Ups