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