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