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