What does being diagnosed with a serious disease mean to you?

What does being diagnosed with a serious disease mean to you?

This is a really interesting question, and oddly, one no doctor has ever asked me.

Talk about a great open-ended question. If you're at a cocktail party and want to get someone else to handle the bulk of the talking (specifically someone who has been diagnosed with something serious at some point in life), this question will let you off the hook for a good half hour. Come to think of it, I guess that explains why doctors don't ask that question.

So what does it mean to me? At first, it meant an escape from an unhappy life and a fresh start. Then, it meant a choice between either working constantly at being healthy or just giving up and taking drugs and powering through, settling for less than optimal health and not looking my best. Now, finally, it means achieving balance between taking care of myself and taking care of everything else. But I know this now: I have to put myself first, or there won't be any of me to put anywhere else.

read what other lupus patients had to say about this question at the Lupie Log:
http://tinyurl.com/4pbe8e4


Carla Ulbrich, The Singing Patient
_______________________________
Humorous songwriter, Speaker, and Author of "How Can You *Not* Laugh at a Time Like This?" Get the book: http://tinyurl.com/348hroc

hear the songs: http://www.thesingingpatient.com

Believable Affirmations

Some of you have probably already heard about affirmations.
Many people suggest using affirmations to create change in your life, whether it be improving your health, your relationships, your financial position, your weight, stopping a habit such as smoking, etc.

I remember when I first heard the idea of affirmations. It was in church. We were supposed to "name it and claim it." In other words, you would just declare out loud repeatedly all day long things like "I am incredibly healthy! I have all the riches in the world! I am thin and gorgeous!" The idea being to make statements that represented not where you actually were in life, but where you wanted to be. And that this version of you already existed in the spirit realm, you just needed to claim it for it to manifest in the material world.

OK, that's the idea. Here's the reality, for me, when trying to make statements that are the exact opposite of my everyday reality.
"I am wealthy and have abundance"
My brain mocks me: "You are an idiot. Look at your checking balance."
"I am in perfect health"
My body "Oh yeah? Well, *I* am in pain and I'm not letting you forget it"
My brain chimes in "Yeah and I saw your lab tests"

How do we deal with this committee in our heads?

Let's just look at the definition of affirmation, shall we?
[af-er-mey-shuhn]

–noun

1. the act or an instance of affirming; state of being affirmed.

2.assertion that something exists or is true.

3. something that is affirmed; a statement or proposition that is declared to be true.

4. confirmation or ratification of the truth or validity of a prior judgment, decision, etc.
5. Law. a solemn declaration accepted instead of a statement under oath.

And that is the problem- part of me knows this stuff just is not true. And maybe it's true in a spirit realm, yada-yada-yada, but the rest of me is just too immersed in the real world and my years of experience to the contrary to shout out things that couldn't be less true. All is does, frankly is tick me off and make me feel sorry for myself. And make me want to avoid church because I feel like a failure.

So... here are 2 more (in my mind) reasonable approaches:
1) keep doing this, and when your mind objects, tell it "I know it isn't true yet, but I'm giving you instructions. I'm programming you about how things are going to be in the future.

2) if that doesn't work, try using what I like to call "believable affirmations." These are things that, instead of being 180 degrees off from reality, are instead just a few degrees off.
For example instead of "I am living in total abundance and am wealthy beyond measure" how about "I am still living indoors." "I still can afford groceries" Those things are true, and in some parts of the world, would make me very wealthy. I celebrate the things that are going right, however small, and work my way up to the bigger things. No one goes into the weight room and on their first visit, tries to lift the heaviest weights. (OK, a few guys do, but they're morons). Reasonable people, people setting themselves up for success instead of failure, start small, achieve small successes, build confidence and take a next, slightly bigger step.

I encourage you to start small, but when you find yourself thinking about lack, about things that are bumming you out, and all that you do not have, challenge yourself to say a believable affirmation, even if it's "well I'm not the biggest jerk that ever walked the earth."
Try it. Let me know how it works for you.

Carla Ulbrich, The Singing Patient, is a comedic songwriter and the author of "How Can You *Not* Laugh at a Time Like This," available now at:
amazon.com: http://tinyurl.com/348hroc
http://www.tellmepress.com
http://www.thesingingpatient.com

guest blog: Lupus and filing for Social Security Disability or SSI

Today we have a guest blog from an expert! Tim Moore, a former medicaid-disability caseworker, sent in this article for the blog on filing for disability when you have lupus (SLE):

Systemic lupus erythematosus (SLE) or simply lupus is evaluated in the immune system section of the Disability Evaluation Under Social Security disability handbook, more commonly known as the blue book. Although there is a specific listing for lupus (SLE) in the Social Security disability handbook (listing 14.02), in a real sense no specific disability criteria has been established for lupus.

Unfortunately, lupus is an exacerbating and remissing autoimmune disorder that attacks different body systems or multiple body systems simultaneously with each exacerbation. Lupus causes a wide range of functional limitations that are dependent upon the body system or organs that have been affected. Consequently, Social Security evaluates the functional limitations imposed by lupus under a variety of other impairments depending upon which body system or systems are affected.

Functional limitations caused by lupus are evaluated under other impairment listing sections that address impairments of the following body systems: joints, muscles, ocular, respiratory, cardiovascular, digestive, renal, hematological, skin, neurological, or brain (mental). This simply means that to be approved for Social Security disability benefits for lupus an individual must meet the criteria established for the body system affected by lupus. For example, an individual with neurological involvement must meet the criteria contained within the neurological listing.

If an individual does not meet the criteria established for their particular manifestation of lupus symptoms, they still may be able to receive Social Security disability if the following is true:

A) Their lupus condition involves two body systems or organs to a lesser extent, and at least one of the body systems or organs is affected by an impairment that is at least moderately severe.

B) The individual is experiencing severe documented constitutional symptoms and signs such as weight loss, joint pain and stiffness, fever, extreme tiredness, or malaise.

Immune system disorders are covered in section 14.00, which has two parts, A and B, that elaborate on just how Social Security evaluates various immune system disorders.

Part A of the immune system section states that the impairment listed in Section 14.00 must involve some sort of deficiency of one or more parts of the immune system, and the listing goes on to list various cell types and antibodies that may be involved.

Part B of the immune system section states that irregularities in the immune system may cause the development of connective tissue disorders. Generally, connective tissue disorders are chronic multiple body system disorders, which vary in manifestation, course, and prognosis. Connective tissue disorders generally cause a loss in body function and often require long term care that involves frequent medical evaluation and treatment.

Since we know what a connective tissue disorder is, we can take a look at what type of documentation Social Security requires for a medical determination.

Social Security uses medical history, lab studies, medical imaging (x-ray, MRI, CT scans, etc.), and even biopsies to establish the existence, duration, and severity of an individual’s lupus condition. If an individual does not have enough medical information, Social Security may purchase non-invasive tests such as imaging or blood work to evaluate an individual’s condition (however they never purchase test that are considered risky or invasive i.e. angiograms or biopsies).

In addition to this type of medical documentation, Social Security requires a longitudinal treatment record of at least three months in order to establish that an active impairment exists in spite of prescribed treatment and that the condition is expected to last twelve months or more.

Why a twelve month period? If possible, Social Security uses a twelve month period to establish the severity and duration of an individual’s lupus. Social Security must also establish that the limitations imposed by lupus prevent an individual from performing substantial gainful work activity.

Individuals with lupus most often do not meet the requirements of a listing; however many may be awarded benefits based upon a medical vocational allowance.

Due to the nature of autoimmune disorders such as lupus, many claimants benefit from medical vocational allowances simply because Social Security considers an individual’s age, education, functional limitations, and work skills when making a medical disability determination on a claim.

The author of this article is Tim Moore, a former medicaid-disability caseworker and a former disability claims examiner for the social security administration's DDS, or disability determination services. Tim Moore is the publisher of The Social Security and Disability Resource Center.

rated PG 13?

OK I admit it. I'm a wimp.
These days I can barely sit through a PG 13 movie without getting freaked out by the violence. It's a weird double-standard, too. I mean, show a naked boobie and it's rated R. Show someone stabbing a naked boobie? Oh, that's OK. Rated PG.
What on earth are we teaching our kids- and society?

I don't have any kids, but I need to protect my own psyche!
I have literally run out of the theater because the movie was so violent it freaked me out. Once, a friend brought me to a movie called "mimic"- science fiction, about genetic engineering, he said. "Oh it sounds smart." It was about COCKROACHES! I looked at him about halfway through and said "Are you enjoying this?" He goes "YEAH!" "Well," i said, "meet you in the lobby."

Thankfully, there are some resources out there now where you can find out ahead of time what you're in for at the movies before you go. Like Movie Mom:
Check here before going to the movies for warnings on violence, etc.:
http://blog.beliefnet.com/moviemom/

interesting blog

Great article on the power of food to heal (or harm) and how some who advocate natural healing are persecuted for it
http://activerain.com/blogsview/564454/Cancer-Doctors-hospitals-would

working out

Really happy to have finally made it into the zone where pushing myself when i'm working out does not mean a setback in my health.

That's a really tough balance when you are struggling with autoimmune diseases- figuring out how hard to push yourself when you're exercising. You want to make progress with your fitness, but if you push too hard, you'll end up flat on your back not only *not* exercising, but not doing much of anything.

Been there, done that, and thanks to 6 months in physical therapy rehabbing my weakened shoulders and back (due to tendinitis and the poor posture I was holding in defense against the pain) and my weak back/ legs (due to inactivity, which was due to the chronic pain from the tendinitis).... well, those 6 months of work have paid off and I am able to push myself and do challenging workouts, just like all those other "earth people" out there who have never had to deal with the challenges of chronic pain and an easily perturbed immune system.

I can't give *all* the credit to PT; I also have changed my diet a lot (gluten free, no artificial sweeteners or MSG, and in general eating a lot more fruits and veggies, no meat and very little dairy). And I take some herbs that were recommended to me by the health counselor at the wellness boutique. They help my energy and my sleep.

I also started drinking nopalea, something I saw on a tv commercial (!) that is supposed ot reduce imflammation. I'll post about that later this week.

Meantime I'm enjoying having muscles that are sore from a good workout. I can enjoy that sort of pain :)
3 cheers for PT!

If you're thinking of getting some PT (and I highly recommend it, especially if you've been injured or laid up for a while), and you're willing to do the exercises at home on the days you don't have appointments... definitely ask around to your neighbors, support group, facebook friends, family, for a recommendation for a great PT facility near you. I went to one that is a sport medicine facility, and it's really inspiring to be surrounded by athletes getting back on their feet.

graduated from PT to... PT?

Today, after almost 6 months of regular visits 2-3 times a week, every week, I graduated from PT! PT being physical therapy. It's one of the few things my health insurance pays for that actual seems to make me healthier. Usually things that help me long term, I have to pay for out of pocket. Drugs that eat your bones and cause fatal brain infections? sure, we'll pay for that. Radioactive dye injected into your veins? Let me get my wallet. Suck the marrow out of your bones? Who do a make out the check to? Massage, acupuncture, vitamins, herbs- are you kidding? You're on your own.

PT somehow made its way into the hearts of the "unsurance" companies, and for that I am grateful. I had tendinitis in my right arm that would flare up and cause other muscles to compensate, creating a chain reaction of misuse of posture, muscles, etc. I just chalked the whole thing up to fibromyalgia or lupus. But when it was just one shoulder over and over I started to think something weird was up, so I got an Xray, then an MRI, adn they found- wait a tumor?! So I was getting that tumor dealt with and the doctor off-handedly mentioned the tendinitis in my arm and I said HOLD THE PHONE! Now I know why my arm and shoulder hurt all the time.

Funny how when something like a tumor or kidney failure are in the picture, stuff like tendinitis gets pushed aside when it otherwise would have been treated immediately.

I actually asked my rheumatologist for a prescription for PT after talking to a neighbor who is a physical therapist. She recommended a really high caliber facility that also is only 10 minutes away by car.

so, here I am today, having "graduated," being completely out of pain and fully functional, no longer need to crawl up the stairs due to weak legs, no longer taking all kinds of pain pills and anti-inflammatories, no longer too uncomfortable to sleep. After cleaning up my diet, getting off all but one drug (the BP med, which has now been cut in half) and getting some regular acupuncture for a while, becoming pain-free was the last piece of the puzzle in getting back to feeling good.

I'm so inspired that I'm going to go back once a month- for personal training! to get in shape! Yes, I'm going from PT to... PT.

I even got a couple parting gifts from the facility. Though I'm tempted to say, "I did 6 months of PT, paid $1000 out of pocket, and all I got was this lousy tote bag and a t-shirt," well frankly being pain-free is such a huge gift I just can't make such a joke. And anyway, I like the tote bag.

My book is featured in the NJ star ledger today

Hope you don't mind if I brag a bit. I've been working on this book for the last 2 years, a collection of humorous essays about dealing with chronic illness and coming out on top. It comes out Feb. 1, 2011, but is available for pre-order now on amazon.com.

http://www.nj.com/entertainment/arts/index.ssf/2011/01/five_books_to_make_you_laugh.html