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